Religious and Spiritual Issues The Palliative Response

Religious and Spiritual Issues The Palliative Response F. Amos Bailey, M.D. Religion and Spirituality at Life’s End  Spiritual and religious concerns may develop or intensify at Life’s End Many patients are thinking about these issues in relationship to their health Many patients welcome an opportunity to talk about religious and spiritual issues as they relate to their current life experience   Barriers to Addressing Religious and Spiritual Issues  Many persons at Life’s End have not expressed their existential concerns for fear of upsetting families and friends Many physicians feel unskilled, unprepared and uncomfortable talking to patients about religious and spiritual concerns  Getting Started  Ask open ended questions Use a format Listen and respond empathically Be familiar with resources – Pastoral Care – Social Work and counseling – Communities of faith    The FICA Format*     F I C A Faith Importance Community Address * Christina M. Puchalski, M.D., M.S. The George Washington Institute for Spirituality and Health Faith “Do you consider yourself a spiritual person?” “Is faith important to you?”  Most patients can answer this kind of question   Include question in social history Normalize discussion of faith as part of routine and not a topic indicating that patient is “imminently dying” Importance “Is your faith important in your life at this time?” “Have you been able to take comfort from your faith?”   May reveal sources of strength and support May guide physician in assisting patient to maintain sources of support Community “Are you part of a spiritual or faith community?”   May reveal a source of support May reveal that individual has become isolated from faith community – Frequent occurrence when chronic illness prevents participation in faith community – Physician may be able to foster re-connection Address “How can I address and respect these issues in your care?” Patient may have important beliefs, practices and rituals that are not part of your tradition Understanding patient’s tradition early on allows the physician to be sensitive to needs   Patient’s Response Many patients…  Speak openly Are grateful to physician for asking about this important part of life Express no specific concerns or needs   When Patient Voices Concern   Respond with… Open-ended questions Comments to normalize the concern “Help me understand what you mean” “Many people with serious illnesses ask such questions” “That sounds scary/troubling to me, too” “Do you have any thoughts about why this is happening to you (your family)?” “How does this make you feel?”      Discussion Guideline Share vs. Fix Do Share patient’s wondering and questioning Share in what it is like to be human and to face what is at Life’s End Do Not Do not try to resolve (fix) the patient’s problem Do not try to answer unanswerable questions     Discussion Guideline Follow vs. Lead Do Stay within physician’s role and expertise Be guided by patient’s own search Do Not Life’s End is not a time to proselytize Life’s End is not a time to try to convert a vulnerable individual Life’s End is not a time to impose personal religious or spiritual beliefs      Discussion Guideline Support vs. Reassure Do     Allow time and permission for people to express emotions Develop comfort with tears and range of feelings Do Not Do not offer premature or inappropriate reassurance Do not be a phony Questions about Physician’s Beliefs  Discussion Guideline Answer simply – “I would like to keep the focus on you rather than me” – “I am a person of faith” Avoid a religious debate Most patients are grateful that physician is interested in this important part of who they are   Steps of Palliative Response Assess For patients with life- threatening and life-limiting illness   Clarify sources of hope and meaning Identify Goals of Care – Maintain hope – Honor preferences at Life’s End Steps of Palliative Response Support  Mobilize resources – Healthcare team – Patient’s community and community at large  Patient’s spiritual/religious practice – Solace – Meaning – Hope – Connection Steps of Palliative Response Self-Care for the Physician Develop healthy personal responses to experiencing the repeated loss of death Self-monitor and seek assistance as needed – Depression – Substance abuse – Burn out   Spiritual Distress The Palliative Response F. Amos Bailey, M.D. Spiritual Questioning At Life’s End  Common – Most patients have been thinking about spiritual issues and are open to discussion with physician Can be a major source of distress Existential – Why things happen – Not answered by science and medicine, which address how things happen – Extends beyond formal religious beliefs   Fostering Transcendence  Transcendence is a state of meaning and hope providing connection with family and others – across life-changing events – ultimately across even death itself Individuals at Life’s End often struggle – to maintain connections – to achieve a sense of transcendence  Examples of Transcendence  If a member of your family has died… do you still consider this person a part of your family? If so, you have achieved some degree of transcendence over death, since you are maintaining a connection with the person who has died  Life as Defined by Meaning Examples of things that give life meaning ~ Family ~ Children ~ Religious faith ~ Career ~ Patriotism and country ~ Friends and community Life as Defined by Meaning The list continues… ~ Material possessions ~ Pets ~ Hobbies ~ Causes, civic clubs, party affiliations ~ The arts - music, literature, visual arts ~ Nature Life’s End Often Threatens Our Sources of Meaning “Everyone wants to go to heaven, but no one wants to die to get there.” - H.L. Mencken Changing Relationship to Sources of Meaning The Patient’s Struggle   To find meaning when can no longer maintain roles that gave life meaning May attempt to maintain meaningful roles beyond ability to perform them The Palliative Response   Reframe and explore sources of meaning Strengthen, maintain, develop connections Suffering with Loss of Sources of Meaning Suffering “The state of severe distress associated with events that threaten the intactness of a person” - E. Cassell, 1991 Spiritual/Existential Distress The Palliative Response Ask and Listen    Accept and normalize Acknowledge spiritual distress Confirm distress as part of suffering at Life’s End Explore   Be willing and available to discuss spiritual issues Help patient incorporate this aspect of personhood into current life and illness Rx for Spiritual Distress Tell the Truth Offer honest assessment of probable prognosis and course of illness Helps patient/family plan and prioritize    Attempting to shield people from “harsh” reality may result in their inability to accomplish important work of Life’s End Rx for Spiritual Distress Help Patient Prioritize *Which is more important?*  Staying in town to take chemotherapy for stage IV lung cancer? or Visiting a daughter in another state who has just delivered a new grandchild?  Tuesdays with Morrie shows how an individual may actively “live” at Life’s End Rx for Spiritual Distress Respond to All Suffering  Excellent Symptom Control – Frees time and energy to work out issues  Community Resources – Assistance to maintain efficacy at Life’s End (e.g., hospice)  Pastoral Counseling – Refer to Pastoral Care and/or faith community as appropriate for each individual Rx for Spiritual Distress Reframe “Helping” Help as Support  Support with truth and honesty   Support to live life fully Support to live with joy, expectation, hope Rx for Spiritual Distress Reframe “Helping” Help as Support Vs. Fix  Not within our power resolve spiritual issues for others  Must support people to find their way RX for Spiritual Distress Help Patient Leave Legacies  Write letters and make videos (especially for children too young to remember)   Tell and write stories Make scrapbooks  Distribute personal belongings, mementos or heirlooms RX for Spiritual Distress Help Patient Make Memories  Celebrate birthdays and holidays “out of season” Family reunions and get-togethers Physician can assist with time off from work for family   The Palliative Response  Spiritual Distress Support process of finding meaning and achieving transcendence at Life’s End Process is unique for each patient and family 